Abstract
There is growing evidence for the benefits of therapeutic groups for children and young people living with chronic health conditions. As a paediatric health service, we regularly run 12 different groups, most of which are informed by a Narrative Therapy approach, with new groups routinely created to respond to the changing needs of children and young people. In this paper, we describe how we have stayed connected to our vision and values in developing and delivering group interventions, sharing our process which integrates different methods of participation and involvement to ensure young people’s voices are centred. We use three of our recently introduced groups to illustrate these ideas.
Introduction
A chronic illness is defined as a disability interfering with normal life and/or demanding treatment for ≥3 months during a year (Westbom & Kornfält, 1987). Estimates range between 10-20% of young people who meet this definition (Jin et al., 2017). The additional challenges that children and young people (CYP) with a chronic illness face are wide ranging, and include effects on activity levels, school attendance, and behaviour (Newacheck et al., 1991), and implications for their developmental trajectory (Taylor et al., 2008). National guidelines on the diagnosis and management of health conditions in CYP note that they are at higher risk of psychological problems than other children and need psychosocial support provided as part of their care (e.g. NICE, 2015).
Psychological support for this population can be provided in many forms, including individual support, family work, and therapeutic groups. Exploring this from a wellbeing point of view, there are a number of advantages to attending a group, including learning from others’ experiences, being able to normalise and validate one’s circumstances, and feeling part of a group with a shared understanding of one’s medical journey (Newman et al., 2004). There is growing evidence for the potential of peer support groups to improve psychosocial and health outcomes (Sawyer et al., 2007). Children with cancer have described how much they would welcome the opportunity to meet and talk to other children with cancer (Mitchell et al., 2006). In more recent years, the UK government has included economic benefit in its vision for CYP mental health provision, (e.g. Department of Health, 2015) and as such has recommended the development of therapeutic groups, which they suggest have financial benefits to both the individual (improving employability) and the taxpayer (providing good value for public funds) as well as positive outcomes for wellbeing.
Our values
Our psychology service is based in an inner city hospital, working across a paediatric health division with CYP up to the age of 25. In the many years of developing and running the service we have created a clear and ethical vision for our work, which centres the voices and wisdom of CYP and their families, focuses on creativity and playfulness, and systemic and narrative approaches. One way that we have stayed connected to our values when running groups is by centring ideas from Narrative Therapy. This encourages richer narratives of a young person and their life, from often disparate descriptions of their experiences which can focus on illness (Payne, 2006). We aim to connect young people and/or their parents with others who either have a similar long-term health condition (for example cancer, type 1 diabetes, ME/CFS) or who are experiencing similar challenges such as exams and chronic pain. These groups have the intention of creating a sense of community, a space to share lived experience, and social support young people may not get from others in their current social network (Ahola Kohut et al., 2018; DuBois et al., 2011). Centring a narrative approach also allows us to provide CYP with a ‘safe place to stand’ (Kaseke, 2010), where strengths and resources are witnessed. Narrative approaches such as Tree of Life (Ncube, 2006) lend themselves to adaptations to other metaphors, and we are inspired by some of the variations that have been published such as Team of Life, (Denborough, 2008), Kite of Life (Denborough, 2010), Recipes of Life (Rudland Wood, 2012), and Beads of Life (Portnoy et al., 2015). These variations captured our imaginations and led us to think creatively about how we might vary the metaphors we use in our narrative groups.
As part of our offer to CYP and families, we regularly run 12 different group (some of these have been described in prior publications - e.g. Beads of Life; (Portnoy et al., 2015) and Tree of Life (Casdagli et al., 2017)).
In this paper we will describe how we have stayed connected to our vision and values in developing and delivering group interventions. We aim to describe our process of developing groups alongside young people and families, with a particular focus on how we have used different methods of participation and involvement, using three of our recently introduced groups to illustrate these ideas. We will describe this through the stages of setting up the group (with examples from the Recipes for Living with IBD group), during the group (with examples from the DiaMEETes group), and after the group (with examples from the Rainbow group). We hope to share the key learnings that have grown from these groups and have contributed to their success.
Developing our groups
Ideas for new groups have come about in a number of different ways. We might notice a trend in referrals where we hypothesise a group could be helpful - for example noticing we were receiving a lot of referrals for primary school age children where a hope for peer connection was described (sparking the idea for our DiaMEETes group), or hearing a number of similar challenges when we speak to families. Whilst the content of each group is unique as it is developed alongside young people and parents / carers, we have been refining our process for developing new groups to help us stay connected to our vision and values in developing and delivering group interventions. This process includes: • Refining our intentions • Participation of young people and their families (co-design and co-facilitation) • Creativity and playfulness • Responding to feedback
Why do we involve young people and their families?
Our service is proud to have established ways of working that position young people and their families at the centre and privileges their knowledge and skills. We continue this tradition when developing our groups by using various forms of youth, parent/carer, and professional participation - an umbrella term for when CYP engage in the decisions and actions made around their own mental health and the services they use (YoungMinds, 2017). Many terms that may come under this umbrella, such as co-production, have been described as slippery concepts when they are not clearly defined, and there is some debate about what constitutes consultation, co-production, co-design and co-facilitation (Social Care Institute for Excellence, 2013). When reflecting on our participation activity, we are conscious about maintaining the integrity of these terms, to honour the rich history of service user movements from which such terms have arisen (National Survivor User Network, NSUN, 2015a), and we reflect on the power differences that may affect how much influence people are able to have on our groups. We are aware that some aspects of co-production would require a culture shift within our organisational context (NSUN, 2015a).
This commitment to participation also aligns with national ambitions to ensure the voices of service users are privileged in developing and evaluating mental health interventions, which has been central to national policy and legislation for over 30 years (NSUN, 2015b). In order to create and deliver groups that meet CYP’s needs, it is important to ask young people for their views and actively involve them as experts of care. This shared decision-making process reduces power imbalances and empowers CYP to be actively involved in advising on the development of groups that best support them.
Power has been defined in different ways, with a consideration for the negative effects of power (e.g. domination and authority) alongside the positive effects of power (e.g. power through collectivity and power from within, i.e. strength of the individual) (see Proctor (2017) for summary). To ensure the genuine participation of service users and to minimise the risk of participation practices becoming a form of social control, e.g. influencing CYP to conform with our views of services, it is important to reflect on power (Proctor, 2017). We view participation and shared decision-making as a way of building on the positive effects of power. Whilst clinicians might be limited in their ability to give power to CYP, they can stop taking power away from CYP (Afuape, 2011). In their study of service user and professional experiences of power dynamics in participation practice, Femdal and Knutsen (2017) suggest that instead of denying the appearance of power, it is important for professionals to reflect on the execution of power in the interplay between users and professionals, which can include subtle forms of power and other dilemmas. This could help to build trust between CYP and professionals, improving attendance and group satisfaction (DeLuca, 2020). Wallcraft et al. (2003) however also highlight the importance of involvement being done well. Whilst there is a potential for empowerment of CYP, there is also a potential for CYP to take on too much or become isolated from their peer group.
The literature describes the potential outcomes of using service-user participation in developing interventions including increasing quality by bringing in the expertise of service users and their networks, providing more diverse and responsive interventions that increase choice, and improving cost effectiveness (e.g. Loeffler et al., 2013). In the groups that we deliver at University College London Hospitals (UCLH), we have at times used focus groups to help capture the ‘voices’ of CYP under our services to inform the creation and delivery of our groups. This allows the young people not to be passive recipients of care but active stakeholders. Christie et al., (2008) found that the parents of children with type 1 Diabetes report high interest in participating in a psychology group, although have different ideas about how they would prefer this support to look, and emphasised the need to consult with service users when designing psychological support for young people and families living with a chronic condition. As such, we ensure that the voices of our service users are central to the development of our groups.
How do we involve young people and families in developing groups?
Setting up the group - Co-designing the Recipes for Living with IBD group
Refining our intentions
A mantra we have used throughout the development of our service is ‘well begun half done’ (Lang & McAdam, 1996), and after identifying the need for a new group, a question we ask ourselves is “what are our intentions in running this group?”. We consider this for each group as a whole, as well as each activity we might include. Identifying our intentions for each new group helps us to build a shared vision as a team that shapes the rest of the group. For our most recent groups we have used participation of our service users to help us to inform these intentions and start well. Their input helps us to think about what psychological approaches we might draw upon to inform the group of the necessary resources, and who in our team might be best placed to develop and run it.
Co-designing groups using focus groups
Despite the numerous advantages of attending groups, young people may be hesitant to engage in them due to the stigma and negative attitudes over help-seeking. A recent systematic review by Reardon et al., (2017) identified a range of barriers that led young people not to seek professional help, such as lack of trust and confidence in medical teams, structural barriers (e.g. costs/waiting times), reduced knowledge of the difficulties they were experiencing and confusion around where and how to get help.
In order to promote access, we take great care in creating safety for people to share their views with us. We also consider participation processes to be key parts of the therapeutic experience at the hospital - allowing CYP who participate to take a different perspective on their care, their expertise, and connect with other CYP who may have similar experiences.
As such, focus groups have become one of the key tools we use to facilitate participation, bringing together CYP in reflective spaces. When setting up a new group for CYP with Inflammatory Bowel Disease (IBD) (which became our ‘Recipes for Living with IBD group’) we ran a focus group as a first step in co-designing the group with young people. We started the focus group by doing a check-in where each young person was asked to introduce themselves and to find a photograph on their mobile phones or an object that they would be happy to share that tells us something about them. The intention was to bring some fun, ensure that all voices were heard (Duffy, 1994) and to allow participants to make decisions about what story they would like to share with others about what is important to them, stepping into experiencing themselves as experts and active agents in their lives (Vermeire & Van den Berge, 2021).
We then spoke about the intention of the focus group; that we were thinking about running a one day group and wanted their ideas and thoughts to help us shape this potential new group. NSUN (2015a) highlights the importance of being open about the constraints and limits of service users' influence on a project, to avoid tokenism and to manage expectations. We reflected on the balance between our hopes of creating a space where young people could bring multiple ideas and perspectives whilst also keeping in mind our service context and limits of staff availability and resources.
We explained that we had some themes and questions we would be inviting them to think about and our role would be to facilitate the discussion by bringing in these questions, although our hope was for them to enter into conversations and share ideas. We invited them to think about their experience of groups by asking ‘What have you found particularly helpful in other groups?’ and ‘What have you not found helpful?’. We encouraged them to think about any groups, in any setting, at school or outside of school. As all young people had some experience of groups, this allowed everybody to bring different perspectives. We then invited them to discuss the idea we had of developing a group for young people with IBD. We asked them how important they thought it would be for our service to offer this group as well as their hopes and expectations of a gastro group. During our focus group, we heard:
“And I think I didn't realise really, that there could be, you know, it could be psychology and gastro, and I think there's more of a need than I think we all individually realise. We all sort of connect in a way that maybe we actually, you know, we have to deal with a lot of, you know, it's tough sometimes and we just need that extra hand with going through, you know, all the appointments and hospital surgeries and all stuff like that” and “having people who know what it's like, and to kind of be able to discuss exactly those kinds of things, I think would be really important.”
We also invited them to discuss access to the group, potential barriers to attendance and their hopes for group content by asking ‘What would make it easier / harder for young people to attend?’ ‘What support would a young person with IBD need to join the group?’ as well as ‘What would you like the group to look like’. During the focus group, we heard about the “struggle with the toilet situation and travel” and young people shared their thoughts about ensuring easy access to the toilet for a face to face group and for all groups: “So, make it normal, make it spoken about, this shouldn’t be something that we are shying away from, or, you know, causing ourselves pain. So yes, I think it's good to address it. People might still not do that. But you know, at least you sort of say it and you're welcoming that like, they can [go to the toilet at any point during the group].” We also heard about young people’s hopes to build a community, not to feel alone, to participate in a joint activity e.g. baking or art as well as “as many fun things as you can think of […] But also, at the same time, like a serious side to help one another.”
During the group: Participation in the DiaMEETes group
Co-facilitation with young people
We also use participation approaches in the running of our groups, using young people to co-facilitate the sessions alongside the professionals involved. A recent example of this is a group we launched in 2021 for children aged 9–11 with Type 1 Diabetes, called DiaMEETes, which was created following a number of requests from parents for spaces where their children can connect with others who are facing similar challenges. A key component of this group is co-facilitation by peer trainers - young people with lived experience of Type 1 Diabetes who are further along their diabetes journey than the children who are attending. The peer trainers help us to decide which activities to include in the group based on their experience, lead some of the games, and take part in the creative activities. For one section of the group we invite the children to take a listening position while we interview the peer trainers on their experience of growing up with Type 1 Diabetes, and how they have responded to some of the challenges that can arise. Here we bring the narrative psychology and participation approaches together, using ‘thickening questions’ to draw out some of the resources and connections that have allowed young people to manage, and support the peer trainers to tell their preferred stories. This helps us to deliver many of the outcomes one might expect from a psycho-education group (e.g. developing coping and problem solving strategies, understanding mental and physical health might be connected), in an accessible, engaging, and credible way rather than just sharing information.
Creativity and playfulness
During groups, we also seek to stay connected with creativity and playfulness, to enable the participation of young people. Afuape (2011) describes creativity arising from connection with others. Creativity requires a commitment to “go beyond what we directly know” and has the “potential to be genuine `openness to otherness'“, an openness to other people’s ideas and experiences, filling the space with possibility, with more playfulness with power and power differences (Afuape, 2011. p.200). Our ability to deliver creative and diverse groups has been enhanced by getting to know our colleagues, their talents, and their networks. In our DiaMEETes group, we employed a number of creative and playful approaches to create an engaging and fun virtual space for the 9–11 year olds who joined us. This included sending the children craft materials in the post to create their own ‘Diabetes’ character, and a box for them to decorate with all their strengths and resources to keep the Diabetes safely inside. We also played some virtual games including a virtual game of catch, where each person was numbered and we passed a virtual ball around the screen. Another energiser was a virtual treasure hunt, where we tasked the children with finding an object in their house that fit a particular theme (e.g. something that helped them during lockdown).
After the group - Rainbow group
Responding to feedback
All the groups that we run evolve based on the feedback collected after they have been completed. Gathering feedback following therapeutic interventions has been considered key within paediatric services to identify what is important and meaningful, and to ensure the services we provide are of the highest standard (Department of Health, 2009; Mercer et al., 2015). At UCLH, feedback from people who have taken part in groups is an integral part of the process. Feedback usually takes the form of a questionnaire and borrows from the Outcome Rating Scale (ORS)/Child Outcome Rating Scale (CORS) format (Duncan et al., 2003; Miller et al., 2003), as well as including a solution-focused (de Shazer et al., 1986) and a Motivational Interviewing/behaviour change slant (Miller & Rollnick, 2013) (e.g., what will you do differently as a result of today?).
Feedback is usually collected at the end of a group, and may also be followed up one to 3 months later to see if changes are reportedly being maintained, or to monitor any future effects of group participation. The feedback can be collated through a program such as menti (https://www.menti.com/) to display and share with the members of the group and with staff. This helps us understand what could be done differently, or identify what already works, in order to continue delivering effective and enjoyable group interventions. Contacting attendees at a later stage also gives us an opportunity to see if young people would like to be involved in future groups or projects as peer mentors (Casdagli et al., 2021), or if they have any creative ideas that might be included in the next group.
We have also noticed where our group offers may not allow for the meaningful involvement of CYP and families from black and minority ethnic communities, LGBTQ+ young people and other ‘marginalised’ groups. In 2019, our division began a programme of activity to create a more inclusive and welcoming environment for LGBTQ+ young people and families (Huckridge et al., 2021). As part of this, we recruited a youth advisor to join as a co-facilitator of the group. Our youth advisor supports all aspects of the group, taking a particular lead in welcoming the participants and helping them feel comfortable, modelling the activities. We have received feedback from group participants expressing how important it is to have a young person supporting delivery of the group, increasing its credibility and comfort. The youth advisor joins us in a ‘debrief’ afterwards, highlighting strengths and challenges in the group and helping us to think about themes for the follow-up groups. The introduction of the youth advisor role required a careful consideration of power. Ensuring transparency, openness and discussion around their role and the possible limits of the roles (e.g. discussions around clinical responsibility and group decision-making) created possibilities for dialogue where the youth advisor could share ideas and be listened to as an equal in the group. Feedback we collected during the group was also used after the group to develop it further. During the rainbow group we asked young people to share their feedback so that we could encourage other young people to join. They helped us understand some of the key ingredients that allowed them to feel safe in joining the group (for example having a ‘check-in’ call before the group so they could ask questions, and seeing pronouns on promotional materials for the group) while also sharing ideas for how this safety could be further developed (such as having a statement on promotional materials that all staff in the group were allies to or members of the LGBTQ+ community). By using the young people’s lived expertise, we were able to increase our reach to more marginalised CYP by understanding how they might be approaching the group.
Our Future Vision
In the 23 years of the current psychology service at UCLH, we have developed and delivered a range of groups for CYP with health conditions and their families, and we are always seeking new ways to improve our group offer. In the last year alone, we have piloted the three new groups we described in this paper. Delivering groups that are bespoke to the CYP and families we work with and are aligned with our service values requires time and, particularly during the pandemic, finding space to collaborate with colleagues and think creatively has become more challenging. Safeguarding time to develop groups, and creating opportunities for staff to connect across the division is critical for the production of innovative and meaningful groups, and needs to be encouraged and protected by senior management teams.
Whilst we hope many managers might see the benefits of groups, when delivering group training we have been asked for ideas on how to defend the time these groups require. Firstly, many of the outcomes of group work, such as targeting isolation and promoting a sense of a shared journey are possible only because of the nature of a group. Also, when considering resources, if we do not have capacity to offer individual psychology to a group of CYP, a group is a valuable and meaningful intervention. We have also found that it is important to share outcomes of the groups widely - we copy invitation and thank you letters to the CYP’s medical team, and email both medical and psychology team members the collective documents and feedback that have come out of groups. This way the referrers and managers get to hear the experiences and feedback of attendees, and are reminded the groups are an intervention in their own right, rather than being considered a “second-best” option to individual support.
We are fortunate that “buy in” within our psychology team comes from each member having connections to at least one of the groups we run, and having witnessed the difference the groups make first hand. Our managers are also involved in consultations with young people, hear what they are asking for and often refer directly to the groups. Resource-wise, being involved in groups is also a brilliant task for trainees and assistant psychologists, who are a huge help with our group offering. We also consider applying for grants and sponsorship in order to trial or extend groups - although we acknowledge that these applications themselves take time!
In this paper we have documented some of our intentions, processes and learnings for running groups over the years. As a response to the COVID- 19 pandemic, we have trialled adapting most groups using online platforms in an effort to foster social connectedness in a time of social isolation. Although research in this area is scarce, ideas for making virtual groups more interactive and playful by Vermeire and Van den Berge (2021) inspired and informed our thinking. Our learnings about how to transfer group processes to online platforms are summarised by Flannery et al. (2021). A hybrid model, combining the use of an online platform with a face-to-face group, is now being piloted, aiming to encourage young people to connect in person while increasing accessibility online. It feels important to evaluate the feasibility and acceptability of this approach, as well as its impact on how aligned groups are to our values. Feedback from CYP and families will allow us to explore the impact of this shift and guide our practice.
While we have developed a proud tradition of involvement, groups are generally professional led and not yet fully ‘co-produced’ with CYP and families. Most of our initial group ideas are not generated by young people and families, and we do not have participation forums where we invite young people or parents to think broadly about service development. We have yet to recruit a young person or parent to our team where they have a full role description, or are paid as a member of the team. In all our groups the majority of the session is delivered by a professional.
While we believe that our participation practice is ethical and has fostered some great partnerships with our service users, we are aware that power differentials exist. This includes the context and social structures that serve to oppress some groups and favours others, personal and institutional racism, structural disadvantage such as prejudice and discrimination (NSUN, 2015a; Hughes & Bisimwa, 2011), the person’s relationship with the medical professional, expertise, and the patient role. We connect with the NSUN (2015b) guidance on navigating this, always ensuring that we are transparent with service users about their involvement and where they are able to have influence, and recognising that different levels of participation are valid for different groups of service users at different stages of service development. As such we take great care in creating safety for people to share their views with us. We also consider participation processes to be key parts of the therapeutic experience at the hospital - allowing people who participate to take a different perspective on their care, their expertise, and connect with other patients who may have similar experiences. We are also committed to putting a spotlight on diversity in our groups, building inclusive communities, recognising the young people who are not well served by our group offer, and ensuring that groups are accessible to all.
Footnotes
Acknowledgements
We would like to thank the young people and families for their ideas, participation and feedback, without which these ongoing groups would not be possible.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
